Later in life

In the later phases of Parkinson’s, your care needs are likely to be more complex. Thinking about the decisions you will face in the future and planning ahead will give you, your carer, family and friends peace of mind.

By planning with your carer, family and healthcare team, you can help to ensure that your physical and emotional needs are met in the best way, in the future.

Palliative care recognises that we all have a right to say what care we would like and for those wishes, wherever possible, to be respected. It upholds the belief that we should not be forced to undergo any treatment against our will and should be consulted if possible when choices are made regarding our care.

Many ethical issues arise in the final stage of life and each country has agreed practices to follow. Ethical frameworks vary depending on where you live so it is advisable to talk to your family doctor or other members of your care team to get more information on local guidelines.

Artificial feeding and hydration – are they compulsory?

Artificial feeding (also called ‘nutrition therapy’) is an alternative feeding method that can be used in some situations to sustain life if eating and swallowing are no longer possible. Artificial hydration involves introducing additional fluid into the body to ensure that adequate levels are maintained.

Some people feel uncomfortable about both procedures as they can be intrusive at a difficult time. The right to refuse these will depend on the country in which you live, but in most cases you have the right to choose or refuse any treatment. If no preference has been expressed and you are not well enough to make a decision, the doctor will always decide what is in your best interests, weighing up the potential advantages and disadvantages. They will consult with your carer and relatives and all decisions will be recorded and reviewed on an ongoing basis.

Whilst artificial feeding or hydration can be very beneficial in some cases, it may not always be appropriate and there is no evidence that nutrition or hydration actually prolongs life when death is imminent.

Artificial feeding

The common forms of artificial feeding are:

nasogastric tube feeding- a tube is inserted through the nose and into the stomach allowing liquidised foods or medication to be passed through. This is generally used as a short term solution to a persistent problem

gastrostomy feeding- a very narrow tube is surgically inserted into the stomach allowing specially prepared foods as well as medications to pass through, sometimes with a dietary supplement. The most common method of gastrostomy feeding is known as PEG (percutaneous endoscopic gastrostomy) and is used as a longer term method of feeding.

Artificial feeding may help to ease any anxiety and discomfort you experience, keep you hydrated and maintain food intake to help your energy levels and general wellbeing, although this will not always be the case. PEG feeding does not eliminate the risk of aspiration (choking if food passes into your lungs) but it does reduce it. It is important to discuss the potential advantages and disadvantages with your care team, remembering that it can take time for lost weight and strength to be regained, so in some cases it may be better to undergo the procedure sooner rather than later.

Artificial hydration

Artificial hydration may be necessary if you are too unwell to drink enough water or eat enough food. This is usually given in a clinical setting, such as a hospital or hospice, directly into a vein using a steady drip feed. Sometimes fluid can be given under the skin by your carer or family at home.

Artificial hydration can improve delirium, nausea, constipation and postural hypotension but it may not alleviate symptoms such as a dry mouth or thirst, and in some cases it might worsen restlessness and incontinence.

As with artificial feeding, medication can still be taken and your doctor will advise on the most suitable way - some may be injected and some may be fed as a liquid or solution through a tube.

Cardio-pulmonary resuscitation (CPR) – is it compulsory?

Cardio-pulmonary resuscitation (CPR) is used to restore normal breathing if your heart stops beating. It includes clearing air passages to your lungs, ‘mouth-to-mouth’ artificial breathing and heart massage by exerting pressure on your chest. CPR is routinely discussed when planning end of life care.

You can make the decision not to undergo CPR and this will be documented as “not for CPR” in your medical notes and care plan. If you have not expressed a wish either way then CPR will usually be given unless your care team believes that it is futile and not in your best interests.

Can I leave my brain for medical research?

You may wish to help the future treatment of Parkinson’s by leaving your brain for medical research but it is always a good idea to discuss this possibility with family, your doctor and the executors of your will.

Because organs need to be collected within a few hours of death it is important to register your willingness to donate tissues with a hospital or tissue bank. Many institutions have a consent form which must be signed and it is advisable to put your wishes in writing and have this document signed in the presence of a witness.

Some countries have a national organ donor register with a card that can be carried indicating consent to donate in the event of death. However, do check that organs donated in this way can be used for research as well as for transplant as this may not automatically be the case.

Your national Parkinson’s association may be able to provide further information or you can talk to your care team or look online.

Euthanasia and assisted suicide

Euthanasia refers to the practice of ending a life in a painless manner, usually by lethal injection or withdrawing life-supporting treatment. Assisted suicide differs to euthanasia as the doctor merely provides the means of committing suicide.

The debate about whether people should be allowed to determine when they die is a complex and long running one. Apart from religious objections, there are legal challenges to be overcome to ensure that legislation to allow euthanasia and assisted suicide will not lead to unnecessary deaths. At the time of writing (2017) euthanasia is legal only in Belgium, Colombia, Luxembourg and the Netherlands and assisted suicide in Albania, Belgium, Canada, Finland, Germany, Luxembourg, the Netherlands and a few states in America. Whilst assisted suicide is not legal in Switzerland, doctors who assist are not prosecuted.

For more information on organisations involved in euthanasia and assisted suicide, as well as further debate on the issue, the following links may be helpful: